Category: Recovery

This is a bit of a catch up post and it may be long. I write today from Patrick’s bedroom. He is lying in bed watching Cars 3 running a Powerade drip into his g-tube on day 5 post tonsillectomy and adenoidectomy.

Patient Zero

How did we get here? Well let’s rewind to the day before Christmas break when I noticed that I had a fever and a horrible neck ache. It likely started with me, though it was Christmas break and I never did get diagnosed with anything more than a virus causing crazy swollen lymph nodes.

The Onset

Mid-January, Patrick got sick. We thought at first it was a cold. He had an ear ache and I took him in to urgent care to be checked with me for an ear infection where we were told it was just one of many viruses, no ear infection. But he got sicker and sicker and on the 3rd day when he refused to eat and I looked and saw the size of his tonsils all covered with white spots, I took him to the pediatrician. She ran a strep test, which came back negative. And we were told again to just go home and wait out the virus.

Sometimes I’m good with that answer. Especially with a kid who’s immune suppressed. But sometimes the mommy spidey sense goes a little crazy. (Ok, ok. It’s actually the extra guidance mothers sometimes get through the Holy Ghost when their children need help.. but we call it mother’s intuition.) Anyway, this time I didn’t feel settled with that answer. So I texted Patrick’s GI and told him what was going on and asked if he had any concerns from a transplant perspective. He called me back almost immediately and told me that he wanted to know what was making Patrick sick so we could stay ahead if it was one of the big viruses that are dangerous for transplant patients.

Diagnosis

So the next morning at 7 a.m. Patrick and I headed up to the hospital’s outpatient clinics where Patrick’s doctor met us and arranged for labwork, an exam, and a viral panel. It was a long morning with a couple of hours of tests. And then we headed home. By evening, all of the preliminary viral tests had come back negative. Despite the brutal flu season, Patrick didn’t have Influenza, RSV, or any of the other circulating respiratory viruses. The doctor said good news. I felt even more at a loss.

Meanwhile, Patrick just kept getting sicker and sicker. We camped out in the basement and I had to start using his g-tube to keep him fed and hydrated. He was miserable. I was exhausted. And I just kept checking for lab results because as the day went on, I became more and more convinced that with everything else ruled out, that Patrick must have the Epstein Barr Virus (EBV), commonly known as Mono.

Sure enough around 4 p.m. the results for that test came back positive. I texted the doctor and said “what’s next?”

Some history

I’m going to take a break in the story here to make a confession. Part of the transplant workup is a very long afternoon where you sit in the room with a transplant nurse and they explain to you in detail all of the risks associated with transplant. You’re aware of a few of them. Of course the risks of surgery. And rejection. Susceptibility to illness. But there is so, so, so much more that comes with immune suppression and transplant. Activity restrictions. Diet restrictions. And perhaps the worst is something called Post-Transplant Lymphoproliferative Disorder (PTLD).

PTLD is caused when a patient who didn’t have EBV before transplant. When they catch this virus the first time while immune suppressed, it can cause the lymphatic system to go a bit crazy. It involves into a form of cancer called lymphoma. So, yeah, transplant can lead to cancer.

And the day that sat us down and talked to us about all of these restrictions and risks, especially this one, we were so overwhelmed by the understanding that the treatment called transplant was much more of a trading in of problems than the cure all the happy ending stories on TV had showed us.. we were so overwhelmed that we couldn’t even stand to talk to anyone that day.

3 years later in another evaluation, we knew this information was coming. But it was still hard to hear and even harder to talk about. So, well, we didn’t. We just warned you that transplant wasn’t a cure.

PTLD workup

Returning to the current story.. I talked to Dr. Jackson in the early evening and he reminded to me that more than my immediate concerns about having a kid with mono, we needed to be thinking about PTLD. I thought we’d set up testing within the next couple of days. But when he called back just after we put an exhausted, sick Patrick to bed to stay he wanted us to come in to be admitted the hospital right away, we were a little caught off guard.

And so we advocated for the value of rest and protection from other illnesses and Dr. Jackson consented to try to set something up outpatient.

But at 5 a.m. he texted and said that admission was the best way to make sure Patrick got in for a CT scan right away. They needed a CT scan of his entire body to check to see if there were signs of PTLD. And he said to prepare to stay for an emergency tonsillectomy.

So that’s what we did. Headed in prepared for the worst and hoping for the best.

Patrick did amazing in CT. We thought he might need to be sedated to hold still. But then decided that he is most cooperative when he’s helped to understand what is going on an given a chance to cooperate. When he feels in control. We got lucky in that we were able to get Patrick’s favorite child life specialist there right on time to go down for the scan with us. And though he was nervous, he was very brave and still.

In the end, the CT scan came back negative for PTLD. (Though it did describe in pretty amazing detail the way that Patrick’s vascular anatomy has changed as a result of his lost central venous access.) So they treated him with an IV antibiotic for a raging ear infection they discovered when he came in. And we got to go home.

In the midst of getting better, we did have one wonderful snow day where we made this snow-Boov in homage to the movie Home. And then had to nap all afternoon to make up for the effort.

Maker:S,Date:2017-10-14,Ver:6,Lens:Kan03,Act:Lar02,E-ve

Getting better

Patrick actually did get better pretty amazingly from the EBV. His immune suppression is pretty low right now because he’s had no issues with rejection. And so the virus mostly ran its course in a couple of weeks. The blood tests went from virus counts in the tens of thousands to “unquantifable” low levels. Patrick’s appetite and energy came back. And the doctors agreed that Patrick had had just an acute case of EBV and had fought it off.

However, his tonsils stayed big. Not just a little enlarged. So big that they were touching each other big. So large I couldn’t understand how he could swallow big.

And, well, EBV is a tricky little virus. I’ve learned a lot about it over the past month. And one of the things I’ve learned that there’s a family of viruses that stays forever in our DNA. Chicken Pox, herpes, and EBV. That’s why you only catch them once. That’s why they are sometimes reactivated when we are stressed. (Shingles, cold sores, “mono makes you tired for months!).

And because EBV lives mostly in the tonsils, their not getting smaller was a problem both clinically and because it meant a long-term greater risk of PTLD.

Meeting with ENT

So we scheduled an appointment with an Ear, Nose & Throat doctor who took one look and said there was no doubt. Patrick’s tonsils were huge and even without transplant concerns, they needed to come out.

We didn’t spend the visit discussing the need for tonsillectomy. We spent it talking about the problem of pain control when ibuprofen wasn’t allowed. Because that’s one of those lifetime commitments you make with transplant.

Tonsillectomy and adenoidectomy

So Patrick had his surgery on Thursday. We were told 30-45 minutes for the procedure. That’s what I expected, too. I’ve sat in lots of surgery waiting rooms watching ENT doctors go in and out every 30 minutes as they reported about placing ear tubes and taking out tonsils. I often wished I could be one of those parents whose concerns were as brief and uncomplicated as those parents. I felt a bit arrogant at times that I was the one who knew the waiting room attendant by name. Who came to stay there.

So it was strange to be in that “simple procedure” role. Except that, of course, we weren’t.

The doctor came out after a little more than an hour to finally tell us that the procedure was done. That the tonsils really were huge enough to need to come out and that the adenoids were even bigger. That Patrick was doing well, but there had been some “oozing” that had made the procedure a little more complicated. And that he’d be awake soon.

And then an hour later, when they still didn’t call me back to the PACU, despite our insistence that Patrick needed us there when he woke up of he’d be combative and inconsolable, the phone finally rang for us. It was an OR nurse who explained that Patrick had continued with “oozy” bleeding and they’d spent all that time trying to get it stopped.

So we waited some more and the doctor finally came back out to say that things were finally settled. And he thankfully hadn’t needed a transfusion. In all, the procedure took 2 and a half hours. We were at Patrick’s side to help wake him, and then moved to post-op.

Maker:S,Date:2017-10-14,Ver:6,Lens:Kan03,Act:Lar02,E-Y

Observation

Patrick was what they call a status A-11. Meaning he wasn’t admitted but he wasn’t discharged. He had 23 hours that he could stay for observation without having to involve the insurance companies for authorization. So we spent the night in Post-Op Recovery.

Patrick was really inconsolable as he first woke up. He just cried and whimpered and wouldn’t talk. Would barely open his eyes. Finally, I left the room to go to the bathroom and as I listened, I realized he wasn’t as much in pain as he was just angry. So I tried a crazy approach where I came in and told him to stop pouting. Then tried to distract him. I made him start taking sips of water despite protest then pointed out that it helped more than it hurt.

It amazingly worked. His anesthesia wore off. His pain meds kicked in. And he woke up sore but pretty happy. We ordered dinner and he wanted some. And soon he’d eaten 3 yogurt cups and drunk some Kids Boost. But the anesthesia made him nauseous and he couldn’t keep much down.

The night was rough. We turned on the movie channel and let it play all night and would doze off and wake again. Eventually as the anesthesia wore off his pain overwhelmed his hunger and he stopped eating. He’d fall asleep but the swelling in his airway made it so his oxygen levels would fall and the monitors would alarm and wake him again. Or he’d start coughing. And his temperature started to creep up very slowly.

But we made it through the night. Post-Op was so very quiet. Our nurse was great. And by morning, I thought we were in pretty good shape. I even though we might beat the odds and go home at 23 hours after all.

And more observation

When ENT came to check in, they decided they’d like to take a little more time to observe. So they moved us to a big comfy room in the surgical unit. And we watched. And what we saw wasn’t exactly comforting.

Not having ibuprofen was proving to be problematic. See, ibuprofen is an anti-inflammatory and inflammation is a big issue with tonsillectomy. It can cause fevers. It can cause airway narrowing. And of course, there’s the problem of finding a balance with pain control when you have to use an opiod.

It took the whole day and night to get a handle on using the g-tube to keep him hydrated and his gut moving, to figure out how to help his cough and keep his saturation up. And to make sure the fever wasn’t getting worse.

They did a chest x-ray to rule out pneumonia. But did advise us that with that long of a procedure, Patrick’s lungs would need help to refill the air sacs.

Home again

But after a second night, we finally reached a stable baseline and headed home. The first day home Patrick was just exhausted. He fell asleep anytime he held still. Wherever he was. They warned us day 3 is the most painful and, well, it was.

Yesterday, he started to perk up a little after a good night sleep. I finally was able to convince him to start sipping some water. And he even ate a little bit of macaroni and cheese. Which wore him out.

But he started to play and tease a little bit. It was good to see his smile back. And our bird, Max, followed him everywhere he went.

He fell asleep by 5 p.m. But that’s good as his cough has gotten worse again overnight. But his pain is a little less, he’s more awake. And before I finished this post, he happily though tentatively ate some KFC mac and cheese for lunch.

This recovery is a slow process. And unfortunately, Patrick’s having to do it the hard way. As caregiver, I am very tired. Sleep, food, and personal care have been hard to come by.

But we’re getting there. And it’s only supposed to last 7-10 days.

And on the other side, my son is acting completely loving and smitten with us, instead of his usual independence seeking self. I’m going to soak up every minute of a cuddly loving boy who just wants to be with me. Because soon he’s going to really be too big to hold on my lap for half an hour.

I hope to post more updates. But remember, as always with this blog. Usually the times I’m quietest are the times that are calm. If I’m not writing, it probably means that we’re busy and happy.

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess. For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals. But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous! Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.

“I feel better, so much betterThank you doc for taking all the ouchies away.I didn’t feel so good till you fixed me like I knew you wouldAnd I feel better. So much better now.”

On Monday, Patrick will be celebrating his 8th birthday. 8! 8 whole years! And 2 whole years since his transplant!

I’m working hard to pulling together his birthday video. We’ve had a big and busy fall so it’s going to be a little late this year. But it’s just astounding to see how he has grown in the past year. In every way.

Last year

This year

The year after transplant, Patrick’s body was shocked and he didn’t grow. But this year we can barely keep up with his clothes. We upgraded him from the only bed he’s ever known, one of those crib-bed combos, because he had gotten too tall for it. His clothes are a medium now and he’s in that awkward size 13 shoe that’s right between little and big kid styles. He is just inches below my shoulder now. And honestly, sometimes I turn around and am surprised to see that he is still small because he feels so big.

He’s grown a lot in spirit, too. For the time being, we have hit upon the perfect mix of medications for his ADHD that keeps him calm and focused while still letting him be his boisterous self. (His psychiatrist warns me he will outgrow these doses soon, but for now they are working.) That has given him the opportunity to grow in a lot of other ways. To sit still and listen and understand. To have his own ideas of how to do things and then to stand up for them. He is becoming more helpful, more responsible, more patient.

He is still the amazingly compassionate child we have always known who is endlessly concerned for the happiness of others. He is the first to give a hug when someone cries. He remembers others’ needs he heard of throughout the day in his prayers. He can tell you all about each of his classmates favorites. And he sees the best in even those who sometimes seem the most different.

With glasses helping his vision, Patrick has grown into a voracious bookworm. He reads all the time. Bedtime reading time is non-negotiable and he’s often found on his bed looking at books. His reading fluency is growing by leaps and bounds. He reads everything to me. And is pretty darn good at spelling. His handwriting is really getting better which is very impressive in light of the fact that he is right-handed and his brain injury has left his right side fairly weak and uncoordinated. He doesn’t like math. But if he forgets to protest because he doesn’t like it, he’s even getting the hang of addition.

We bought a trampoline last spring and Patrick can often be found in the backyard jumping. He went from not jumping evenly with both feet to starting to do jumping tricks. One of our favorite summer passtimes was to go into the backyard and alternate between jumping until he was too tired and reading Dick and Jane. He’s discovering joys we didn’t think possible like bike-riding and swimming.

He earned his Tiger Cub Rank last month and most of the available beltloops. He’s excited to move on to Wolves and we hope he’ll be as happy and welcome in his new den as he was in the one we left. He had a wonderful experience at scout camp this summer. Patrick loves scouting and I love what it teaches about being a good boy and growing into a good man. He is really trying to be trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent… and HUNGRY.

We went to a Patrick’s annual follow-up appointment with his transplant team last week. They were so happy with what they saw in him. The first thing the surgeon said was “well he has changed since we last sawl him,” commenting on how tall and grown-up Patrick seems now. While Patrick sat on Dr. Mercer’s lap and took pictures on his cell phone, we reviewed his diet, growth and medications. With everything going so well, Dr. Mercer decided that Patrick may not still need steroids to prevent rejection. They gave us instructions on how to gradually wean him off of them and the acid controller that they have made necessary for him, too.

He gave him the all-clear for sports. (Adaptive baseball here we come, we hope?) And we decided it’s time to start planning to remove Patrick’s port. With things so stable, they think that he can soon only need labs 4 times a year. That makes the port not worth the risks. Still need to talk to the doctors here about how to go about that.

With so much growth, we faced a big choice for Patrick this year. In the Church of Jesus Christ of Latter-Day Saints, 8 is the age at which children are generally considered old enough (accountable) to be baptized. We believe that younger children are innocent and unable to sin and repent, therefore baptism is not required for them. Most 8 year olds are able to understand enough about the gospel, baptism, promises, and repentance (if not more) to be able to decide if they want to be baptized. Living in Utah, where the church is so prevalent, 8th birthdays are a really big rite of passage.

So we have been watching. And studying. And praying. And finally a few weeks ago we met with our Bishop to talk about baptism. By that interview, the answer was fairly simple. We decided that Patrick is still not at the same level as most 8-year-olds. Right now, he is still innocent. And so, for the time being, he will not be baptized.

For those of you wondering about the doctrinal implications of this, the Book of Mormon teaches:

Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them;

To be clear, Patrick has a very strong love for Heavenly Father and Jesus. Just this morning he refused to get out of the car because I’d forgotten to say a morning prayer and he wanted one. He wants to be baptized. And we believe that in a few years, he’ll be ready to understand and make that choice.

For those with logistical questions: Because we believe Patrick will someday be able to be baptized, we are not doing any replacement baptism celebrations. Those things can wait a couple of years so he can appreciate them. For the first time in his life, something can wait. He has years ahead of him so this is ok.

I’m going to throw in a separate bonus post about this decision, but in light of an 8th birthday, I thought at least this much should be answered for now.

Instead of 8th birthday traditions, we are going to do something that Patrick has rarely experienced in his life. We are going to have a plain old ordinary birthday. With terminal illness, then transplant, birthdays have always been a bit unusual. This year, Patrick’s school is celebrating Halloween today and not next week so he won’t have to share except for trick-or-treating. It’s a long weekend. We’ll have cake and present with family at Sunday dinners. We’ll go to an amusement park on Saturday so he can ride rollercoasters and drive cars. We’ll send treats to school We’ll decorate with a banner and balloons. I’ll make him his choice of dinners. And we’ll have cupcakes and sing to him and open presents. Just us. Just boring. It will be wonderful.

Because he is wonderful. And we have been blessed with a little bit of ordinary. And for Patrick, ordinary deserves to be celebrated.

Once each February, a week is dedicated to helping raise awareness about tube feeding. I feel like the past 7 years of our lives have been a walking tube feeding awareness ad. If you haven’t picked up on the fact that you can lead a full and happy life while being tube fed, then you haven’t been paying attention. And so I try not to get too vocal during this week.

However, this week, just on time for tube feeding awareness week, Patrick has started to require supplemental feeding. And so I’m going to take a minute anyway to explain what a frustrating blessing a feeding tube can be.

Since last October, we’ve been trialing having Patrick eat 100% of his calories. And he has lost weight ever since. At first it was really rapid. That wasn’t a surprise. He wasn’t used to eating that much and we dropped a lot of calories and hydration very suddenly. We’d fattened him up and he had room to learn.

He really did a marvelous job picking it up. In a couple of weeks he figured out how to drink enough to stay hydrated. And he picked up meal and snack times pretty well. But he just kept losing. We’ve added more snacks. We’ve added more butter and fats to every meal. We started giving him milk at every meal. We added protein shakes.

But months later, he is still losing, even after “doing everything” that his dietitians could think of to recommend.

There just don’t seem to be enough hours in the day for Patrick’s belly to take in enough food. He gets full and uncomfortable and doesn’t want to push more food.

Eating is such an emotional thing. It’s social. It’s bonding. It combines smells and tastes with memories. But what if your memories of food weren’t positive? What if for years eating made you sick? Was always high stress? What if you were expected to dive in suddenly at a level of eating skill than other kids took 7 years to master? And what if the stakes were so high that everyone was watching to see if you did it? And when you felt completely stuffed, you were always being told “just one more bite”?

Patrick was losing weight. And I found that I was pushing too hard. Worrying too much about making sure Patrick got enough calories and then getting really upset when he didn’t eat what was put in front of him. And that pressure was actually causing us to lose ground. Making Patrick not like foods he’d once loved.

So we’ve turned again to the feeding tube. Just a little. A week ago Brian suggested that maybe we should start giving some carnation instant breakfast first thing in the morning when he wakes and last thing before bed. We know it helps his belly wake up. And it would give him extra calories.

The first day that we did it and he wasn’t hungry for breakfast after. I had a good cry about losing breakfast. Losing progress. Not fully achieving the miracle. But Howie convinced me to give it time. And now I see that, this way he’s getting the same morning calories. Plus he’s hungry for a snack and to eat his lunch at school.. something we’d struggled with. In other words, Patrick seems to be better off this way. And maybe I was looking the wrong way at miracles.

I’m finding myself humbled and grateful for medical technology that can help him yet again. I am remembering that just because all struggles aren’t gone, it doesn’t mean a miracle hasn’t happened. Not all healing means perfect health.

Do you know that tube feeding is so new, even in the United States, that Patrick’s GI doctor was the first to place a g-tube (stomach instead of nasal feeding tube) at his our children’s hospital? That it’s so new that there are countries where the technology is only still just being taught?

We take it for granted. This ability to feed patients who otherwise couldn’t eat enough. I’ve even heard people say it’s weird, gross, unnatural. But really, it’s amazing! Minimally invasive. In fact, I often wish every child could have a button. That I could have one myself. I know hundreds of families with feeding tubes. I can count on one hand those who weren’t immensely grateful for them. Who didn’t feel that they exponentially improved their child’s quality of life.

Hopefully, we’ll only need this little bit of help for a while longer. Just enough to take the “Please eat so you won’t die” sort of pressure off of learning to eat. Please note, “Please eat so you don’t need a feeding tube” doesn’t work. Patrick knows from experience that being fed through a tube is exceptionally convenient and comfortable. Fed is fed. And it’s so stress-free he sees no reason to avoid it. I mean, seriously, if you could just keep doing the things you love without having to stop to eat or drink, wouldn’t you choose that too sometimes?

However, we are finding it’s possible to take a bit of the hunger/starvation edge off of learning to eat this way. Just enough feeding to help his belly move. Just enough calories to help him grow but let him be hungry. And hopefully soon, Patrick’s love of food will help him overcome some of his fears. And he’ll need less and less of the help.

But in the meantime, isn’t is wonderful that we don’t have to do it without help?

Tubies of the world unite. Or some other catchy social media phrase meaning tube feeding is awesome.

Because we were out of town, I didn’t do a proper share of this video in this blog. So, if you missed it, here is Patrick’s traditional birthday video. Creating this video was a very emotional journey for me. Looking back at Patrick’s transplant journey, some images and memories that I hadn’t revisted in nearly a year was… well…. hard. I shed an awful lot of tears. Especially as we tried to capture our feelings of gratitude for the amazing gift that this year has been.

It’s long this year. It was just too hard to leave anything out of the story. So plan for 20 minutes and bring your tissues.

We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.

About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.

They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.

He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.

Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.

The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.

Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.

The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.

Posing with some statues at the zoo

The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.

Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.

A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.

Couldn’t resist this photo op.. given that these two missed wearing their matching minion costumes last Halloween.

We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.

After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.

And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.

The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.

The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.

It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.

We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.

And then, we caught the flight home.

I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.

In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.

Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.

“Scripture says, ‘Search diligently, pray always, and be believing, and all things shall work together for your good.’This doesn’t mean all things are good, but for the meek and faithful, things—both positive and negative—work together for good, and the timing is the Lord’s.” – Neall F. Marriott, Yielding Our Hearts to God

I thought that having Patrick back in school would open up much more free time for things like blogging than it has. However, life is just as busy now as it was before. If not more.

At first it wasn’t. At first, I kind of wandered aimlessly through the days that Patrick was away. I didn’t recognize at first what was happening. I was watching an awful lot of Netflix and I was trying to catch up on things around the house. But I was pretty darn tired and pretty darn disorganized and wasn’t getting through nearly as much as I hoped I would each day. Looking back, I realize that I needed a chance to just reclaim my life a little bit after being a full-time caregiver for a year. I also had to trust that I had enough control over my own life to dare try to do more than these things.

Looking back, it took a lot to teach myself to slow down after transplant. To be ok with days spent sitting in a hospital room or in the Ronald McDonald House just taking care of Patrick. And now that I have the ability to do more, it took a lot to teach myself again that it was ok to NOT just pass the day with as little on my personal to-do list as possible.

That isn’t to say that I’m back to working on my personal to-do list. No, Patrick still commands my schedule right now.

A couple of weeks ago, we went to Parent Teacher Conferences at the school. Patrick is doing great with school overall. I’ve never seen him so well-behaved and engaged in a class. He is making friends. He sits in his seat and he raises his hand. He is making progress in reading, in math (where it turns out that going back and teaching the fundamentals is helping him to be less frustrated), and even in writing despite his severely limited fine motor skills.

However, his qualms about the school bathroom were just getting worse. He went from holding it all day to having accidents. Every day. And then to beginning to have accidents on the weekend at home because he forgot that he was wearing underwear and supposed to make it to the potty.

So, at parent teacher conference, I told the teacher I’d like to take away his pull-ups. However, the district has made the very sucky decision to save money by making special education class sizes almost as big as regular classes. There are 16 kids now in the class that was 9 students when Patrick joined it. Only instead of 16 typical kids, these are 16 kids with learning disabilities and behavioral and medical needs that have to be attended to. I can’t even imagine trying to manage 16 IEP’s. Thanks Granite School District.

And the message I was getting about potty training was: we’d love to help, but what can we do? We can’t afford to send adults out of the classroom.

And so, if I was going to ask to take pull-ups away, I also needed to offer help. Ok. You’re right. I’m under no legal obligation to help. But if I want to do this the right way, to have Patrick succeed, etc.. then I do.

So, for the past 2 weeks I have been meeting Patrick and his class immediately following their lunch recess to help to take Patrick to the potty. At first it went great. Patrick tried when I helped him and, even though it took a lot for him to get the courage, even went with his aide in the room (and me holding his hand.) I set up a super awesome “potty steps” reward system where I put pictures of each of the steps of going to the bathroom on a pill box and put rewards inside for him to earn.

Meanwhile, I helped in the classroom a little. I assisted at recess so lunches could happen on a field trip day. I organized a bookshelf. I helped some kids who stayed in from recess to finish up homework.

The second week, though, I think he figured out that I’d end up staying longer if I was still waiting to help take him to the bathroom. And so he waits longer to go. He waits until a moment where his aide is either gone or busy so I end up taking him alone. And so now we’re reinventing things again. It’s very frustrating. There was one particular day where I kind of just sat in the corner and waited for him for several hours. Finally recess rolled around and he still wouldn’t go so I didn’t go with him. I went and sat at the office and waited. And tears started to come and I had to step outside to calm down. He didn’t go at school that day at all. I ended up putting him back in a pull-up and leaving.

But as I sat in my car reading my scriptures, I ended up reading about patience in weakness. And I realized that that is what this is. Just weakness. Just a human struggle. Just and example of the purpose of mortality. And a temporary one at that. And the Savior’s love kind of healed my heart and gave me a great big dose of long-suffering to go along with this struggle. And we’re still at it.

There are some good things about this plan. It’s snapped me out of my Netflix daze. I only have 3 hours in the morning to get things done before I have to eat lunch and get to the school. So I’m actually working in my time at home instead of puttering around. Also, because I’m trying to leave the school by 2:30 most days even though school isn’t over till 3:30, it has given me a dedicated hour for scripture study and for a daily walk. Both of these goals are easier when I know what time of day I’m doing them. Sure, once weather gets bad, it won’t be as pleasant to leave the school and go find a spot to walk and read.. But we’ll cross that bridge when we get to it.

Seeing this is going to be a long-term process, I asked and asked if I could be more useful at the school. And starting next week, I’m going to start helping with a reading group in a different classroom. This frees me up so I’m not hovering over Patrick but keeps me nearby for the daily “do you need to go yet?” standoff.

I hope someday that Patrick will forgive me for blogging about it.

I’ve mentioned before that I have started to go to therapy. And we’ve been talking a lot lately about PTSD. Our whole family struggles with this to some degree.

The thing about living with a trauma is that words can’t capture it for anyone else. But it becomes a part of who you are on a very deep level. I know that there are some people who don’t like to hear me say that Patrick’s transplant was traumatic. How can a miracle be traumatic? But in a very real way, it was.

One little phone call. We left home. We left friends and family. We left work and school. We left everything routine in our lives. We lived for months under constant threat, never knowing what new life-threatening medical issue might arise. Patrick suffered intense ongoing pain. For a child, that is impossible to comprehend. As a parent, that is one of the worst experiences you can live through. It was temporary.. but that doesn’t diminish how hard it was.

And transplant was only the worst of it. We’ve been living with a miniaturized version of it for years.

Facebook has launched a new “memories” feature that shows me, daily, my previous posts from the past 6 years. For two weeks in September, my daily “memories” were of Patrick in the hospital recovering from surgeries or fighting off infections or praying we’d get one more central line in. No wonder I was an anxious, depressed basket case at the start of September. My body has been taught to brace for a fight when that month rolls around.

I’ve also been working this past few weeks on Patrick’s annual birthday video. I sift through a year’s worth of photos and try to pick the ones that tell the story of his last year best.

Last year, I was 6 months late completing this project as I couldn’t stand to look at pictures of the life that we had left behind when we went for transplant. I had to wait till we were starting to see hints of that life coming back.

But this time around. Oh golly. Looking at these pictures has brought back a flood of memories that I had, quite literally, blocked from my memory. Your mind does that. It compartmentalizes the hard stuff so you only pull it out and look at it when you need it.

I have found myself for the past 2 weeks waking up in the middle of the night with vivid memories of the months following transplant. At first, just our hotel room. The carpet. The sink. Then I could remember the ICU. It really shook me. To remember how afraid I was. How much pain Patrick was in. But as I’ve worked, I have also remembered the amazing support we received from friends and family and strangers alike. The feelings of love. And the sweet comfort from the Holy Ghost telling us this was all in God’s plan and would be ok. And it’s brought me peace again.

I’ll apologize now. When I publish this video. It’s long because I didn’t know what parts of the story to leave out. And it makes me cry every time I look at it.

Anyway – all of this. Where am I going with it? Well, it’s much easier to be patient with Patrick when I look back and realize what he’s come through this year. Not just offering it as an excuse as I started out doing.. but genuinely seeing what he’s been through.

In just one year, he’s learned to walk again. He has learned to eat for the first time. He has learned to go to the potty. He has learned to read. He has learned to do basic math. He has learned to speak in clear sentences. He has learned how to strike up a conversation with an adult (usually about their car). He has learned to not be afraid in the water. He has learned to live without a line. How to drink enough water in the day. He is learning how to be safe while being independent, how to play with other children in the front yard, how to play in a different room than me. He has learned how to wash his own hair and get out of the tub when he is done bathing. If he’s a little bit shy and a little bit afraid doing only one of those new things without his mommy (who he was with 24/7 for most of the past year).. that’s really pretty darn good. And he is really pretty darn amazing.

One other thing. Patrick had a doctor cancel an appointment a month ago when she had to go for an emergency appendectomy. It hadn’t occurred to him before that grown-ups might have had surgeries too. In fact, he’s discovering that many grown-ups have been through surgeries. So if he strikes up a conversation by asking you where you had your surgery, know that he is trying to put his experience into context with other people. Trying to find some common ground with his very uncommon experience.

The conversation usually goes like this: “Where you have your surgery?” You answer with whatever general body part and little more explanation required. He might ask “Did it hurt? Did you cry?” You probably will say it hurt. Then he might tell you, “Mommy have hers in her belly button.” I had a laproscopy to diagnose and treat my endometriosis. You give some affirmation. Eventually he’ll say. “I have my surgery on my WHOLE body.” I usually answer with something like, “Yes you did. You were brave and it helped to make you strong.” Something like that.

In another variant, he might tell you it’s ok to be different. To be mad. To be sad. To talk about your feelings. To be missing teeth. (He’s got two missing and a third wiggy right now.) To be a different color. To be bald. To be “indopted.” And he might tell you it’s ok to eat mac and cheese in the bathtub. That’s all a reference to a book by Todd Parr that he’s been reading about why it’s ok to be different. Just laugh along. It’s also ok to have a pet worm.

Posts navigation

Patrick’s COTA Campaign

Hi! I’m Emily

In 2008 my husband Brian and I adopted an amazing little boy named Patrick. Patrick was born with Short Bowel Syndrome as a complication of gastroschisis. He received a liver-intestine transplant in 2014.

In addition to Short Gut, Patrick struggles with a brain injury, developmental delays, and food allergies. But in spite of all his challenges, Patrick faces life with excitement, happiness, and a twinkle in his eye.